Jack Robinson had a mission – to donate his hair to the Little Princess Trust, to support his brave cousin Kieran who was diagnosed with Guillain-Barré syndrome and to raise funds for GAIN.
Kieran’s mum, Jackie recalls:
In September 2008, when Kieran was four we remember him complaining of being unable to flush the toilet which was a button, his hands “felt funny” and he couldn’t push the button down. He had also been tiring easily throughout the day with back pain at night and no matter what pain relief we gave him it didn’t have any affect, he was in agony. Kieran’s condition deteriorated over the next three to four days, particularly his movement and doctors were completely baffled thinking he had a virus and the back pain was due to a fall.
Kieran seemed to go downhill in front of our eyes, he could barely walk, kept falling over and his balance was off. We went back to the GP and again, were told it was viral but I knew something wasn’t right and demanded a second opinion. I think we saw every doctor, consultant etc under the sun in A & E – MRI scans, CT scans, X-rays, blood tests, you name it but they couldn’t understand what was going on or what it was. He was admitted, it was terrifying.
Once in hospital, I fully expected a fast diagnosis but it took another three days of more tests including lumbar punctures, before the final nerve conduction test, finally confirmed GBS. Kieran was in so much pain – it was heart breaking.
They continued to monitor Kieran closely and thankfully did not need to be ventilated. They decided not to treat him with intravenous immunoglobulin or plasma exchange as they felt it was too risky at his age; they also believed it was beginning to plateau and so confirming it was a mild case.
Kieran was in hospital for two weeks, we had a room to ourselves and on the second week, a physio came to help with his movements and to build up his strength. He lost a lot of weight and wasn’t particularly eating so the dietician was also involved.
There was a lot of input once we were home with physio, OT, dietician etc and regular check-ups with his consultant. Kieran’s balance took a while to come back, he had to basically learn to walk again, gross motor skills as well as fine motor skills, hand and eye co-ordination with pincer grip for fastening buttons, holding cutlery, a pencil, everything you take for granted really! He had 13 different medications/pain control to take and he tired very quickly.
It took over two years to fully recover, Kieran seemed to make good progress, but would then plateau for a while and even take steps back. Pain in his feet was always a big problem as was fatigue, it took years for his running to become “normal” and his confidence took a huge knock. He would be very frustrated at not being able to keep up with his peers.
I am not actually sure when Kieran was classed as fully recovered, but to look at him now you wouldn’t have any idea. He has been left with some residual weaknesses, he lacks stamina and speed and still has bother with fatigue if he has a lot on physically. Now and again he will complain of pain in his feet, he has pain with his wrists if doing written work for any great length of time and has his own way of holding a pencil or cutlery.
We have found solutions and as Kieran gets older there will be other obstacles I am sure, but we will find new solutions and Kieran will continue to take it in his stride.
Due to Guillain-Barré syndrome being so rare, particularly in children, not many medical professionals had experience in dealing with it and so most of the time, couldn’t answer our many questions. We had lots of support from family & friends but the internet became our source for information and guidance. This is where I found GAIN. They were a superb help, posted out information leaflets, a specific child friendly booklet for Kieran to help him understand and also put us in touch with another parent through email who had shared a similar experience.
“For GAIN, a special thank you to them from myself and the family for the help and support they gave us in the beginning and still do through their facebook page where parents/carers/family and survivors can chat and share experiences and help answer one another’s questions. When you are initially told how rare it is you feel so isolated, that changes when you jump online – it doesn’t seem so rare at all and everyone’s input is fantastic. “
It was important to both Jack and Kieran to raise awareness of GBS, to help those, like Kieran, who have been affected by the syndrome, raise funds and after hearing about The Little Princess Trust, Jack also wanted to grow his hair so long that it could be put to good use and made into a wig for a little girl who had lost her hair due to cancer. So in 2014 Jack started to grow his hair “it was not an easy job for a blue eyed boy!” said his Mum Lorna, “he has been called a girl – daily, has endured the repetitive dose of ‘ohh, when are you going to get that hair cut’, been teased by other children (who don’t know him) for having long blonde hair, been mistaken for his sister Emily and even been asked to leave the boys toilets because he has been mistaken for a girl. That one, really, really hurt. But throughout, he kept his resolve and his humour to continue with his mission.”
The June 2016 haircut was no ordinary haircut and quite an emotional event. Jack dressed up as Thor and was supported by his family and friends – Chewbacca (East Ayrshires Provost!), Batman, Batgirl and Captain America from Party Palz. His golden locks are now on their way to be transformed, Jack has his ‘boy’ status back again and over £1700 has been donated to GAIN.
“The cousins were united in their mission and my goodness did we all GAIN a lot! Jack seems a different boy these days, not only because of the short hairdo, but also confident in himself that he’s completed his side of this mission. Kieran had the hugest smile throughout the whole event, quite the confident speaker talking to Alan Brown MP (who also joined in with fundraising), being splashed all over the local press and indeed as part of raising an EDM in Parliament! It’s been a WIN – WIN all round, for the boys, for raising awareness and we hope for GAIN and the people that need their invaluable support just as Kieran, his mum Jackie and family all did, not so long ago.”
“Kieran and I would like to say a massive thank you to both Lorna and Jack for all the hard work they have done. For thinking of GAIN, raising awareness and the fantastic amount that has been donated, absolutely amazing.”